It Happened to Me: I Have a Severely Disabled Child

Our Betta is beautiful, and the hardest working baby we know. She cannot hold up her head. She cannot sit or crawl or even reach for us when she is crying. She cannot move, really. She does not appear to be aware of anyone or anything.

Aug 7, 2012 at 10:54am | Leave a comment

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There is an essay, well-known to parents of special-needs kids, that suggests having a disabled child is sort of like planning a vacation to Italy, only your plane lands in Holland instead.  We are told that while Italy would have been very nice, if we spend our lives mourning the fact we never got to Italy, we will never appreciate everything Holland has to offer.  

When my partner and I realized one of our newborn twins would be permanently, and massively, physically and mentally disabled, it felt more like our plane to Italy had crashed.

Our daughter -- sweet, sweet, Betta -- is 22 months old. Within 36 hours of being born, she was admitted to the newborn intensive care unit (NICU) because of difficulty breathing and eating. She spent 58 days in the NICU while doctors tried to figure out what was wrong.  They sent her home when they realized there was nothing more they could do.  They still have no idea what’s wrong and it’s been over a year.  

This is not a feel-good story.  

Our Betta is beautiful, a wonderful big sister, patient with her mommies, and the hardest working baby we know. She endures weekly physical and occupational therapies, tried a movement therapy known as Feldenkrais, and has just started water therapy. She wears braces on her feet. She is visited twice monthly by a vision expert from the Blind Babies Foundation. Her hearing is also compromised and she undergoes regular testing to rule out a neurological hearing loss. She is on a special diet to control her seizures. She has a tube in her stomach to help her eat.  She cannot hold up her head. She cannot sit or crawl or even reach for us when she is crying. She cannot move really.  She does not appear to be aware of anyone or anything. And, yes, I am crying as I type this.

My partner and I have cried a lot since Betta and her twin brother, Jerzy, were born. We thought once we got the all-clear on the amniocentesis tests, we were assured of healthy babies. Nope, amnios only test for the most common genetic abnormalities.  

While Betta does not have an official diagnosis yet, we know whatever she has is extremely rare. Jerzy, our miracle boy, the one we did worry about in utero because he wasn’t growing well, turned out to be just fine. Healthy.  

Betta, the one we were so relieved was growing bigger and stronger every month of my pregnancy, is the one we worry about now, all the time. Jerzy gets us Betta’s pacifier and watches as we fill syringes with her medicines twice a day.  He holds her hand when we are huddled together in bed reading stories before bedtime.  

The latest theory is that Betta suffered a random, spontaneous, genetic mutation while being conceived. Since I don’t have anyone in my family with either a physical or mental disability, I assumed whatever happened with Betta was due to genes on the donor’s side, even though he had a clean bill of health, too. Lesbians always blame the sperm donor! I did.  

But deep down I worry I am to blame. I am the birth mother, after all. I was 40 when I gave birth.  We had tried for years and been so elated when I finally conceived, but maybe we tried too hard. Too many fertility drugs, so many artificial inseminations, so many artificial everythings. 

But blaming someone for what went wrong feels like a disservice to our daughter. Our little girl is not a freak of nature. She is not. Did I tell you she laughs sometimes? Not the laughs that signal a seizure, because she has these, too. But every once in awhile, Betta will coo and smile and giggle. We don’t always know what it’s in response to, but it’s without a doubt one of our favorite sounds in the world.  

Oh, and her smile! We’ve long-hoped for some sign from Betta that she knows she’s not alone, that she knows we are here. Her smile is her gift to us. These are joyous moments.

I remember getting on a bus with Betta for the first time and asking the driver to lower the handicapped ramp so we could board. I told him, “My daughter is disabled.” It might have been the first time I had said it to a stranger and I’m sure my eyes welled up behind my sunglasses. We got on and I knew the other riders had heard me and were now looking as the driver lifted us up and strapped Betta in. It was a little like coming out.  

I was not for a second ashamed, but did it always have to be such a production? It gets better, though, right? I was pulling Betta down a slide the other day at the playground, on a blanket since she couldn’t do it otherwise, when another mom asked me if Betta were asleep.  I shook my head no and replied, “She’s disabled.” And then I pulled her back up to start again.

Because we want this essay to be of some help to someone, here are some things we have learned since becoming parents to a special-needs kid:

Always get a second opinion from the top doctor in the field.  

We see doctors at UCSF and when we inquired about a second opinion from a well-regarded specialist at UCLA, we were told it would be redundant. Upon the advice of another parent, we went anyway and it helped Betta’s treatment tremendously. No cure, still, but she was prescribed a drug that finally, finally, finally! controlled her seizures.

Talk to EVERYONE.  

I made the mistake of isolating myself while Betta was in the hospital the first two months of her life.  I couldn’t talk to anyone. I was in a daze caring for our other child while shuttling back and forth visiting Betta in the NICU. Don’t do that. People want to help. Reach out to family and friends. We would not be standing today if not for our support network.  

Identify local resources. 

Support for Families of Children with Disabilities has been invaluable to us. The group offers a wonderful community of parents who have been through everything you are feeling and a wealth of information about navigating this new world of your family’s. And while we have yet to meet another LGBTQ family with a disabled child, we don’t feel alone. Thanks to the families who came before us, the fact that Betta has two moms has not added any layer of complexity to us accessing resources. Apart from crossing out “Father” and “Mother” on certain forms and substituting “Parent,” it’s been a non-issue.

Keep a record with the names and dates of doctors seen, tests performed, medicines prescribed etc.

Do this early. Note any changes in your child’s behavior or symptoms. You’ll want to track all this information as it will help you take care of your child the very best you can. And every doctor will ask you for this same information and so will every nurse, medical student and aide. Don’t fight it like I did and rely on your memory, it really does start to overwhelm. Here’s a link to a website that’s beta testing right now and can help:  http://www.dotfriday.com/.

Find a nice pharmacist!  

Everyone at our local pharmacy knows our family because Betta is such a frequent customer. You won’t believe how helpful pharmacists can be when problems arise with your child’s insurance or prescriptions or refills. And it really is always something! Same goes for finding a nice, experienced pediatrician and team of service providers. Your family will be assigned a social worker and you will speak to him or her more than your spouse at times. You will start to love your child’s team!   

Trust your instincts and be persistent.

You are the quarterback, the CEO, the center of your child’s care -- you know your child best. A 20-minute visit with a medical professional is nothing compared to the 168 weekly hours you spend with your child. Speak up and tell them what you observe, what you need them to look into, what you need help with. If a doctor insists on a treatment or a medication you are unsure about, make that doctor defend and outline their reasoning until you are comfortable with the explanation.  

Doctors can be awful about listening to parents and parents can be too deferential to doctors. We had a bad experience when Betta was still in the NICU. My partner and I repeatedly saw Betta have scary, violent convulsions but the doctors kept telling us these episodes were merely reflux. Even the nurses agreed they looked more like seizures. As it turned out, Betta was having seizures. I really wish we had been wrong.  

And lastly, do not hide your disabled child or keep silent in uncomfortable moments.

People are more compassionate than you think and making people more aware that disabled kids are part of their world gives them a chance to express that compassion.